Ok, so we knew baths, haircuts, bum wiping and nail clipping were all forms
of torture for my Ryan, and even though it may have been easy for me to accept
my Haight Ashbury boy, I knew other kids wouldn't find him quite so endearing.
Most of us at some point in our childhood were on the receiving end of some
meany kid's comments or name calling and regardless of how many years have
passed, we probably still remember that meany kid's name (and feel so vindicated
when we see what a loser they are on Facebook). I had to find a way to make
these tortuous hygiene moments more tolerable for my fella so he didn't get his
butt handed to him on the playground (of course with his long Freddy Kreuger
like nails I feel certain he could have held his own).
Since I broke up with my BFF, Denial, it was time to take action. The first
step was to call our county's Early Intervention Program. On the day of the
assessment I was a nervous wreck (more so than on any other typical anxiety
ridden day for me). This sweet young lady showed up at our door and the first
thing Ryan did was point to the top of the steps where our dog was standing and
said "Niyka". Score!! A symptom of (whisper) Autism, is lack of finger pointing.
Clearly this nice intake specialist lady should just turn around and leave,
right? Sadly, she didn't (sigh). Someone must have tipped off the nice intake
lady about me because after greeting Ryan so sweetly she quickly assured me it
was not her job to "diagnose" my son, therefore my constant stream of "Do you
think he is autistic?", "Do kids with autism do that?", "Well, if he were
autistic he surely couldn't have completed that task, right?", "OMG, what are
you writing in your notebook?" all were deflected, rephrased, and ignored.
Basically she gave me that "I know you are worried, but I think YOU need the
therapist" smile (I'm incredibly familiar with that smile) and said, "It
doesn't matter what you call it, what matters is getting Ryan the help he
needs." I hated her. When you aren't the nice intake lady, when you are the
freakishly anxious mom whose son may or may not be autistic, it da** well
matters what you call "it".
Granted, she was right (I hated that too), the goal was to help Ryan, not
reassure his mother's neurotic fears that he would one day be able to live on
his own, get married and have three kids, regardless if this is what he wanted
or not. AWEnestly, at 2 years of age, unless nice intake lady had a crystal ball
in her bag of assessment tricks and tools, there was no way to predict that
outcome for any child. Some days I really long for the Wicked Witch of the
West's crystal ball (and Dorothy's shoes).
Occupational Therapy was the recommended course of action. Since I was
completely unfamiliar with what an Occupational Therapist (OT) does, I of course
assumed they would be preparing Ryan for his career or a trade of some sort and
immediatley began second guessing that perhaps they did indeed have that
Wicked Witch's crystal ball. Fortunately, we were assigned the most amazing OT,
I swear I occasionally caught glimpses of a halo and wings. When you are worried
for your child, regardless what that worry is, having the right person in your
corner makes all the difference in the world. Miss M was going to help my
beautiful boy and in the process, help our family.
The first thing she taught us in tackling the Tactile Defensiveness thing was
the difference between light touch and deep pressure touch. She gave the perfect
example of how after a very trying day, you come home fall into the arms of your
spouse and when they give you that big squeeze you just sort of decompress. Ryan
craved these "squeezy tights", as Miss M so lovingly called them (today, we
still use the term), regularly. He especially loved them when he was upset, hurt
or frustrated. To this day, the minute he is injured, he presses so hard on the
injured area, that I'm convinced a simple scratch will turn into a broken bone
(and I will be called in for questioning), but to him instead of making it feel
worse, it makes the boo boo feel better. Deep pressure touch helps regulate
Ryan. If you have seen the HBO movie Temple Grandin (a woman with
autism who gave the world it's first real glimpse into what living with autism is truly like) you may remember the "squeeze machine" she created to provide her with that deep pressure touch because she preferred her machine to actual people giving her
that sensation.
Of course, clueless mother that I was, Miss M said it was evident that Ryan
didn't like light touch. Wait a minute...he loved to be held by me, he loved to
have his back tickled and he loved rubbing his silky sheshe (blankie) and that
all sounds like "light touch" to me?! Miss M explained that those light touches
are expected ("Mommy tickle Ryan") and from someone he trusted. I swear in the
middle of this therapy session, my neighbor walks in, says hi to Ryan then just
gives his leg a little pat. Ryan was playing with his writing desk toy and
although he never looked up or acknowledged my neighbor, he immediately pressed
hard on his leg where she patted him. Son of a....Miss M was right (now I hated
her too...just for a second). How as the mother of this little boy who the sun
rose and set on, did I not notice that before? Miss M must be gifted or there
really was something to this occupational therapy stuff other than preparing my
son for a successful career as a carpenter or some other trade like I initially
thought. I think it was both.
of torture for my Ryan, and even though it may have been easy for me to accept
my Haight Ashbury boy, I knew other kids wouldn't find him quite so endearing.
Most of us at some point in our childhood were on the receiving end of some
meany kid's comments or name calling and regardless of how many years have
passed, we probably still remember that meany kid's name (and feel so vindicated
when we see what a loser they are on Facebook). I had to find a way to make
these tortuous hygiene moments more tolerable for my fella so he didn't get his
butt handed to him on the playground (of course with his long Freddy Kreuger
like nails I feel certain he could have held his own).
Since I broke up with my BFF, Denial, it was time to take action. The first
step was to call our county's Early Intervention Program. On the day of the
assessment I was a nervous wreck (more so than on any other typical anxiety
ridden day for me). This sweet young lady showed up at our door and the first
thing Ryan did was point to the top of the steps where our dog was standing and
said "Niyka". Score!! A symptom of (whisper) Autism, is lack of finger pointing.
Clearly this nice intake specialist lady should just turn around and leave,
right? Sadly, she didn't (sigh). Someone must have tipped off the nice intake
lady about me because after greeting Ryan so sweetly she quickly assured me it
was not her job to "diagnose" my son, therefore my constant stream of "Do you
think he is autistic?", "Do kids with autism do that?", "Well, if he were
autistic he surely couldn't have completed that task, right?", "OMG, what are
you writing in your notebook?" all were deflected, rephrased, and ignored.
Basically she gave me that "I know you are worried, but I think YOU need the
therapist" smile (I'm incredibly familiar with that smile) and said, "It
doesn't matter what you call it, what matters is getting Ryan the help he
needs." I hated her. When you aren't the nice intake lady, when you are the
freakishly anxious mom whose son may or may not be autistic, it da** well
matters what you call "it".
Granted, she was right (I hated that too), the goal was to help Ryan, not
reassure his mother's neurotic fears that he would one day be able to live on
his own, get married and have three kids, regardless if this is what he wanted
or not. AWEnestly, at 2 years of age, unless nice intake lady had a crystal ball
in her bag of assessment tricks and tools, there was no way to predict that
outcome for any child. Some days I really long for the Wicked Witch of the
West's crystal ball (and Dorothy's shoes).
Occupational Therapy was the recommended course of action. Since I was
completely unfamiliar with what an Occupational Therapist (OT) does, I of course
assumed they would be preparing Ryan for his career or a trade of some sort and
immediatley began second guessing that perhaps they did indeed have that
Wicked Witch's crystal ball. Fortunately, we were assigned the most amazing OT,
I swear I occasionally caught glimpses of a halo and wings. When you are worried
for your child, regardless what that worry is, having the right person in your
corner makes all the difference in the world. Miss M was going to help my
beautiful boy and in the process, help our family.
The first thing she taught us in tackling the Tactile Defensiveness thing was
the difference between light touch and deep pressure touch. She gave the perfect
example of how after a very trying day, you come home fall into the arms of your
spouse and when they give you that big squeeze you just sort of decompress. Ryan
craved these "squeezy tights", as Miss M so lovingly called them (today, we
still use the term), regularly. He especially loved them when he was upset, hurt
or frustrated. To this day, the minute he is injured, he presses so hard on the
injured area, that I'm convinced a simple scratch will turn into a broken bone
(and I will be called in for questioning), but to him instead of making it feel
worse, it makes the boo boo feel better. Deep pressure touch helps regulate
Ryan. If you have seen the HBO movie Temple Grandin (a woman with
autism who gave the world it's first real glimpse into what living with autism is truly like) you may remember the "squeeze machine" she created to provide her with that deep pressure touch because she preferred her machine to actual people giving her
that sensation.
Of course, clueless mother that I was, Miss M said it was evident that Ryan
didn't like light touch. Wait a minute...he loved to be held by me, he loved to
have his back tickled and he loved rubbing his silky sheshe (blankie) and that
all sounds like "light touch" to me?! Miss M explained that those light touches
are expected ("Mommy tickle Ryan") and from someone he trusted. I swear in the
middle of this therapy session, my neighbor walks in, says hi to Ryan then just
gives his leg a little pat. Ryan was playing with his writing desk toy and
although he never looked up or acknowledged my neighbor, he immediately pressed
hard on his leg where she patted him. Son of a....Miss M was right (now I hated
her too...just for a second). How as the mother of this little boy who the sun
rose and set on, did I not notice that before? Miss M must be gifted or there
really was something to this occupational therapy stuff other than preparing my
son for a successful career as a carpenter or some other trade like I initially
thought. I think it was both.
To help desensitize Ryan to his utter dismay of light touch, we were introduced to the Wilbarger Brushing Protocol and given a body brush like the one you see here. We were shown how to brush Ryan's arms, back, legs and the soles of his feet (like that's gonna happen) with the brush using medium to firm pressure and long deep strokes. This was to be followed by joint compressions where we were instructed to use gentle pressure and squeeze or squish his shoulders, elbows, ankles, wrists, knees, hips, fingers and feet. We were suppose to do this for three to five minutes six to eight times a day. Say what??!! I only brushed my VERY hairy Siberian Husky dog like twice in her fifteen years (which was very evident if you ever wore black clothing to my house). How was I going to "brush" a child, who by the way had very little hair, and who hates light touch? I was told he may be resistant at first, but most kids with sensory processing difficulties really enjoy it. I was skeptical. The technique is meant to calm and sooth the nervous system which then allows the nervous system to "integrate more experiences". Clearly, no one cared about my nervous system.
Just like no two neurotypical kids are alike, no two kids with autism,
sensory processing disorder or any other kind of "different-ability" (I detest
the word disability) are alike either and although the Wilbarger Brushing
Protocol can be very helpful for a lot of children, it turned Ryan into a cross
between The Tazmanian Devil and Damien from The Omen. Two people you would not
want at a dinner party. It wasn't pretty. Just like Taz, he would literally spin
around like a tornado and throw his body into the couch, the wall, the chair,
me. What the he** was happening? If he wasn't crashing into things he
would go and sit upside down on the couch (this is still how he reviews his
flashcards for quizzes...a note to anyone with kids studying for the SAT). His
teachers at daycare reported more aggression at school. Clearly his fight or
flight response was being exacerbated with the brushing. Although this brushing
thing was new to me, clearly I didn't think this type of behavior was the
anticipated result. After a few long weeks of Taz-Damien, we were instructed to
stop the brushing.
So, it didn't work, that must mean he is totally fine, right? If it's meant
for kids with sensory processing difficulties and it didn't work on Ryan then
his sensory system must be just fine. Oh no, what if he is so much worse? What
if he actually has autism and that's why it didn't work, his system is so off
that the brushing protocol failed?! This is my brain, day in and day out. Hence
the demand in my will to donate said brain to science.
This was just our first step into the world of Occupational Therapy and
although the Wilbarger Brushing Protocol was a bust for Ryan, we have been
taught many tricks of the trade over the years. Although I initially
misunderstood the role of an OCCUPATIONal Therapist, I have come to realize that
teaching Ryan to be a carpenter or an electrician (I really am stupid, aren't I?)
is a valuable skill, the tools these OT's have given him over the years are
what will make him live a happy life and achieve the goals HE wants to, not the
goals of his worried mother. He may never want that wife and three children I
envisioned when he was 2, but he is slowly learning that he is a smart,
compassionate boy who can achieve anything he sets out to do. Some tasks may be
bigger mountains for him to climb and it may take him longer, but knowing that a
"different-ability" does not mean a "disability" was a lesson taught to
both of us by a wonderful angel who showed up on our doorstep and always left
covered in dog hair.
sensory processing disorder or any other kind of "different-ability" (I detest
the word disability) are alike either and although the Wilbarger Brushing
Protocol can be very helpful for a lot of children, it turned Ryan into a cross
between The Tazmanian Devil and Damien from The Omen. Two people you would not
want at a dinner party. It wasn't pretty. Just like Taz, he would literally spin
around like a tornado and throw his body into the couch, the wall, the chair,
me. What the he** was happening? If he wasn't crashing into things he
would go and sit upside down on the couch (this is still how he reviews his
flashcards for quizzes...a note to anyone with kids studying for the SAT). His
teachers at daycare reported more aggression at school. Clearly his fight or
flight response was being exacerbated with the brushing. Although this brushing
thing was new to me, clearly I didn't think this type of behavior was the
anticipated result. After a few long weeks of Taz-Damien, we were instructed to
stop the brushing.
So, it didn't work, that must mean he is totally fine, right? If it's meant
for kids with sensory processing difficulties and it didn't work on Ryan then
his sensory system must be just fine. Oh no, what if he is so much worse? What
if he actually has autism and that's why it didn't work, his system is so off
that the brushing protocol failed?! This is my brain, day in and day out. Hence
the demand in my will to donate said brain to science.
This was just our first step into the world of Occupational Therapy and
although the Wilbarger Brushing Protocol was a bust for Ryan, we have been
taught many tricks of the trade over the years. Although I initially
misunderstood the role of an OCCUPATIONal Therapist, I have come to realize that
teaching Ryan to be a carpenter or an electrician (I really am stupid, aren't I?)
is a valuable skill, the tools these OT's have given him over the years are
what will make him live a happy life and achieve the goals HE wants to, not the
goals of his worried mother. He may never want that wife and three children I
envisioned when he was 2, but he is slowly learning that he is a smart,
compassionate boy who can achieve anything he sets out to do. Some tasks may be
bigger mountains for him to climb and it may take him longer, but knowing that a
"different-ability" does not mean a "disability" was a lesson taught to
both of us by a wonderful angel who showed up on our doorstep and always left
covered in dog hair.
I AWEnestly believed that this photo (which sits on my mantle today) was proof that the light touch of grass was not a problem for my boy. Denial may not have been in my social circle anymore, but we still cross paths.
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